Keeping secrets, but why? How SMA really affected my school days
Pondering why I didn't own up to all the physical challenges of my teens
Late August marks the start of a new school year, which still affects me even as a 29-year-old working adult. Though I graduated from college in 2016, my niece is starting first grade, my older nephew starts preschool in a few weeks, and both of my younger nephews are back at our house for day care. Both my sister and sister-in-law are public school teachers, so my mom takes care of their kids while they work.
This shift to school days means I now wake up early so my parents can help me with my morning care routine before the kiddos arrive. My dad leaves for work early, but he’s able to transfer me from my bed to my wheelchair and move my electric ceiling lift to my bathroom. From there my mom showers and dresses me and gets me into my chair. I then usually read a few news stories on my phone during breakfast.
Once the kids come running through the door, I play a few rounds of hide-and-seek with them, which they always manage to win. Then I have to make the long commute to my home office to start my work day.
On weekdays, I now get up close to when I’d roll out of bed in middle and high school. Back then, the mornings were especially hectic, as I had to do my care routine and get to school before my first class at 7:30. My mom and I both dragged during car rides, but somehow we made it on time every day.
At that point, I wasn’t just tired because I hated waking up at the crack of dawn; I had other obstacles, which only my parents and close family members understood. As a teenager, I was less than forthcoming about how much SMA affected me.
My health secrets
On multiple occasions throughout my adolescence, I’d come home from school with a migraine, sleep for a few hours, and then wake up with worries about finishing homework on time. And while friends would know when I was hospitalized with pneumonia, they never heard me talk about how I woke up dozens of times every night because my respiratory function was so unstable. Whether it was conscious or not, I hid my exhaustion from my peers, preferring instead to gripe about teachers and classes like everyone else.
The reality is that living with my neuromuscular disability affected me in more ways than I cared to admit. It made it physically difficult to get through each day, and it also drained me mentally and emotionally. My drama teacher, with whom I’m still friends today, only learned about my pervasive migraines when I mentioned it in a play I wrote during my junior year.
Why I didn’t talk about my struggles and the severity of my health concerns is beyond me. Though surgery in 2011 helped significantly improve my respiratory issues and led me to have a fulfilling senior year of high school, I nonetheless brushed aside many of my other struggles. I clung to a “suck it up and carry on” mentality.
Had I sought community as I do now and been more open when I wasn’t OK, I imagine that my youth would’ve looked differently. I might’ve processed my emotions better and connected with others who had SMA. I can’t change the past, but I can live in the present and prepare myself for a better and less angsty future.
As I think about my niece and nephews, I ponder the challenges they’ll face when they grow up. I hope they’ll learn that it’s OK to be overwhelmed at times and to lean on others for support. They may be the ones just starting their educational journeys, but I’m in a constant state of learning.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.